Thank you to all those who have signed up for this study. The 2000 target has now been reached. CALLING PEOPLE WITH FIBROMYALGIA WE NEED YOUR HELP TO COMPLETE THE LARGEST GENETIC STUDY OF FIBROMYLAGIA EVER!

The study can be completed at your local GP practice!

We need to reach our target of 2000 people taking part in this study and we are 60% of the way there! With YOUR help we will have enough people in the study to allow scientists to tease apart the genetic factors contributing to the development of fibromyalgia.

We have spoken to many people with fibromyalgia and have heard their frustration at the poor treatment options available to those living with chronic pain. The team working on this study includes scientists and doctors convinced that we will be able to devise better therapies only with improved understanding of the biology of pain.

Thank you to the 1200 of you who have already enrolled in the fibromyalgia study – your support and effort is invaluable. If you have already received a blood donation kit we should be grateful if you would kindly arrange this by the end of April 2013. If you have received a blood donation kit but are unable to take part in the study, please return the kit to FREEPOST address: Admin Team, Department of Twin Research, St Thomas’ Hospital, FREEPOST LON7776, London, SE1 7YY (no stamp required)

If you have fibromyalgia and would like more information about the study, please call us on 0207 188 1928. On registration you will be sent a questionnaire, a blood donation kit and instructions. Or you can register on line at http://www.dtrsurvey.co.uk/fibrogene

If you have registered but have not yet received a blood donation kit, please bear with us as we continue to send kits out – the response has been most impressive. We will post the kit to you as soon as we can.

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Fibromyalgia Association UK calls for greater awareness
and education to help thousands of diagnosed patients in the UK

London, May 12th– Fibromyalgia Association UK (FMA UK) today calls upon MPs at a closed session at the House of Commons to request for greater research into the level of fibromyalgia suffering in the UK. Campaigners for the charity, predominately run by volunteers, demand a clearer assessment on the extent of the condition ahead of an official review by NICE in 2016.

We are appealing for further trustees to aid the running of the association. Expertise is currently needed in finance, fundraising and publicity. We already have volunteers contributing to these areas, but are seeking trustees to take responsibility for the overarching administration and development.

Trustee meetings are held monthly via Skype and last about 2 hours. There is an annual meeting that coincides with our group leaders’ meeting over a weekend.

If your Medical Professional needs some education in fibromyalgia you can request that an FMA UK Medical Professionals Pack is sent out to them. All we need is the name of the Medical Professional and the address of their practice. We will then send a pack to their surgery addressed from us to them.

We are delighted to announce that our recent assessment for The Information Standard has been successful and we continue to fulfil the criteria for using the TIS logo on our publications.

The rigorous process that has to be in place ensures that up to date evidence is used and presented to people in an appropriate way. The process is ongoing and requires much diligence by everyone involved.

We would like to thank everyone who has worked on our publications or sent in their comments and suggestions for improvement

FMA UK is now able to receive text donations from your mobile. With our partners you are now able to send a text from your mobile to 70070 with the code of FMUK01 and your amount that you would like to donate to us. For example if you would like to donate £5 to FMA UK* you would text FMUK01 £5 to 70070. You would then be given the opportunity to add Gift Aid - meaning FMA UK benefits from an extra 25% on top of your original donation.

You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.

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